Friday, August 22, 2014

The ALS Ice Bucket Challenge Is Not Stupid

The ALS ice bucket challenge is not stupid.

There is skepticism and criticism about how genuine the reason behind why people are catching on. The articles about skipping the water wastage and just donating... or the complaints about rich celebrities not giving clear instructions to donate... are missing what this fundraising movement is doing. There are endless fundraisers that ask for donations and charities that work so hard to raise awareness... that haven't been able to reach the magnitude of this single ice bucket challenge. And why do we need to do this? Because research requires money. And any step towards finding even better support and treatment for those affected, if not a cure, is a major, major step.

I don't personally know anyone with ALS. But like ALS, I know, or have known, people who also suffer from progressive, degenerative diseases. My mother suffers from Parkinson's. As a family member of a loved one who suffers from a progressive disease that has no cure, I cannot even begin to explain what this means to me.

If you're familiar with the ALS ice bucket challenge, you may have seen personal videos of people who are suffering from the disease explain what it is like for them to live with it everyday. I could only tell you how it is for their families.

I had an almost perfect childhood with a comfortable home, loving parents and sibling, and I went through highschool and university living through all the stages of growing up happily. When I graduated. I convinced my parents to let me live in a different city to experience independence. I had (and still have) an amazing group of friends. Life couldn't have been any better. I didn't know life any other way but to be pretty darn good. My parents were a big reason for that. Life's challenges were all temporary. And the sun would always shine through the clouds eventually after each blip and life would have its perfect days again.

Then came my mom's diagnosis. I'll be honest. I didn't know how to deal. And it took me not days or months to figure it out... I'm still learning. Everyday. This wasn't just a little blip that would go away the next day, it is something that I very much spend every single day thinking about. I spent countless days fighting internally with myself. About every thought that crosses my mind. About acceptance. About balance. About gratitude on what I do have. About myself. About my mom. About growing up. About the future.

I've always known my mom to be someone who's strong. Stubborn even. She fights for what she needs, what she wants... what's right for her family and herself.  She's helped me fight all my worries growing up. She was my go-to person when I needed strength. She was the one who always told me that everything will be okay. So... needless to say, watching her struggle, trying to keep that strength and fire going inside her, as the disease progresses... is beyond heartbreaking. It was almost overnight where I felt our roles have switched. I was the one telling her over our afternoon coffee that "it will be okay". Inside though, I was thinking, "will it?".

She wanted to chop up carrots one evening. I stood in the kitchen not assisting, just watching. Always giving her a chance first. Her will power and stubbornness tells her she can do it. Her hands and her mobility tells her otherwise. With any task she struggles with, I watch her intently waiting to see when or if I needed to intervene. I asked if she needed help chopping the carrots. She replied with a determined "no". But, she couldn't do it. Her anxiety has now made her hands shake and tremor even more. She walked over to the sink, gripping the side of the counter with her shakey hands, lowered her head, and closed her eyes to hold back tears. The disappointment, frustration and pain she felt inside at that moment... I felt them too. I picked up the knife and I started chopping.  "That's okay, mom. I can chop the carrots, but I don't know the recipe. You have to finish it. That's something you can do, that I can't do." She resumed back to the cutting board and helped slowly picked up the chopped carrots and put them in a bowl. I walked away after, and let her continue.

I want to be there for her for those moments. To give her the strength and the encouragement she needs. Just like how she's done for me countless times before.

This isn't about me or my life... but why the ALS ice bucket challenge is not stupid.

 I saw first hand how my uncle suffered with Parkinson's and succumbed to it. When my mom was diagnosed, the memories of my uncle's trials came rushing back. The only solace I had was when the neurologist, the same doctor who treated my uncle 20 years ago... said that treating PD now is so different from back then. There has been many more advances in medications, treatment, and support systems since. He reassured my mom that she has many more options than my uncle did. And for that, I thank all those involved with doing the work to make it better for those having to deal with this progressive degenerative disease.

However, it costs money. And that is why any fundraising can make such a difference for those in need. The ALS ice bucket challenge has raised over 2 million dollars in two weeks. The growth in awareness has been tremendous. I've now watched videos from across the world, and people pouring donations big and small. Yah, so there are people who are doing the ice bucket challenge just for the sake of dumping cold water over their heads and some aren't donating, but you know what? Who cares. The idea behind this is not to try and make everyone righteous. But to reach out to those who can make a difference. For each person who chose to dump water over their head, even if just for fun...  if that can continue to spread awareness, then the more support there will be. Just care about those who are doing it for the right reasons, those who are donating because these videos have reached them... and know, even if there are some that still don't know what ALS is, there are thousands and maybe even millions more that do know now and have supported because of this challenge.

This is what we are all capable of. Don't let any other article stop that.

Please continue your donations for ALS and/or any other charity of your choice. (the ice bucket challenge has since crashed their website, but they do provide a link where donations can still be made).

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